How do women experience care during pregnancy, birth and early motherhood amid severe disadvantage? And how do those experiences relate to women's rights to safe and appropriate care, dignity, autonomy and choice, and respect for private and family life?
It was these questions that led Birth Companions and Birthrights to embark on joint research, funded by the charitable foundation Trust for London, exploring the experiences of women in London and the professionals who care for them.
Two years later, we are launching ‘Holding it all together’, a project that seeks to capture the reality for both women and professionals. The title is a direct quotation, taken from one of the specialist midwives who took part.
The report brings together insights from 12 in-depth interviews with women who faced significant disadvantages during their perinatal journey, ranging from mental health issues, housing problems and domestic abuse, to substance misuse, poverty, asylum-seeking, immigration, trafficking and many more. We also interviewed 26 midwives, health visitors, family nurse practitioners and birth supporters. Their views have much to tell us all about what women in the most difficult circumstances need from the maternity system, what they feel they get, and the factors that make it easier and harder to support them. Without making use of these insights and the growing base of evidence gathered from women experiencing multiple disadvantages, we will struggle to realise the commitment to addressing health and social inequalities that was made in the NHS Long Term Plan (NHS, 2019), or the ambitions of Better Births (National Maternity Review, 2016) to provide safer, kinder, more personalised care.
This piece of work focuses on women facing multiple disadvantages, a group that has been shown to have worse outcomes and often worse experiences of care. All the women who took part (n=12) had at least three complex factors at play in their lives, while eight had experienced five or more. As this research was reliant on voluntary disclosure, it is highly likely these figures under-represent the true picture.
The themes that emerged centre on six key areas linked to women's experiences and rights: choice and consent; trauma; asylum and immigration; housing; specialist midwifery and continuity of carer; and navigating multiple systems.
Choice and consent
Three-quarters of the women described situations of inadequate choice and consent, including where their preferences were not respected and they did not fully understand aspects of their care before procedures took place. Women did not always expect choice, but benefited from being given time and support to understand their options and express what was important to them.
Midwives described language issues, a lack of adequate interpretation services and learning difficulties as being significant barriers to some women's ability to understand and express their choices. They also questioned whether consent and choice were offered at all times.
Specialist midwifery teams and continuity of carer can help, particularly if clinicians work from a trauma-informed perspective, but not every woman experiencing disadvantage benefits from these services yet.
Trauma
Many of the women interviewed had experienced previous trauma and/or were currently experiencing traumas that affected their perinatal journey. Those who had felt able to disclose their trauma to maternity services didn't always feel this resulted in support or ‘a listening ear’.
The needs of women who were preparing to have their children removed by social services, or who had experienced removal, were largely unrecognised or unaddressed. Professionals described a lack of support for these women:
‘It reinforces to them that they have no value … It's like saying, “Actually, you only mattered up to the point you were pregnant … once the baby is out, we are not worried about you anymore.”’
Professionals spoke of the need for trauma-informed care in recognising trauma and complex needs, as well as additional training, especially for health professionals who were at an early point in their careers.
Midwives also discussed their own experiences of trauma in the course of their work. Specialists commented that they provided a ‘safe space’ for women, but it could be ‘exhausting’ holding women's issues and feeling responsible for outcomes, saying they needed support in this role.
Asylum and immigration
One-third of the women interviewed indicated that they were current or recent asylum-seekers. These women were particularly vulnerable to social isolation, and to unstable and inappropriate housing. They also experienced particular issues around choice and consent due to a lack of information about what care they could expect in the UK.
None of the women described NHS charging. However, the midwives interviewed expressed deep concern about charging policies and their perceived role in policing immigration, which they considered outside their remit. Some described examples of overseas visitors managers acting inappropriately, interrupting appointments. Midwife interviewees considered charging ‘a false economy’, as it resulted in women avoiding antenatal care and subsequently presenting with greater emergency needs in labour.
Housing
Poor quality, inappropriate and insecure housing was a central problem in many women's lives. One woman described being ‘trapped’ in her flat during pregnancy due to mobility issues requiring specialist transport to access maternity care, which did not always arrive; and being unable to wash at home. Others described housing as unclean, unsafe and unsuitable for a baby. Many were in housing designated as ‘temporary’, although a number of women had been there for months or years.
Midwives perceived themselves as having little influence over housing. It was described as a ‘complete nightmare’, with midwives saying that:
‘No one takes ownership … It's not a safeguarding issue. It's not a social services issue. It's not a midwife's issue. It's not a health visitor's issue. It's not a GP's issue.’
Housing issues have direct effect on maternity care, as women in temporary or transient housing may be less able to access continuity of carer or services based on long-term therapeutic relationships. Women may not have a safe place to be in early labour, but may not be asked about this or feel confident explaining it. Some reported women having to stay on the postnatal ward after they would normally have been discharged because they did not have a place to go.
There can be little doubt that housing issues need to be more fully understood and urgently addressed if we are to improve care and support for perinatal women.
Specialist midwifery and continuity of carer
Although none of the women experienced full continuity across antenatal, intrapartum and postnatal care, more than half had received some continuity during the antenatal period. Almost all these women were very positive about their experiences, particularly the opportunity to build a relationship of trust and to be better understood as a person.
Women who did not have continuity said they would prefer it:
‘It's better for you to have just one person. It's no good to have different one … explain over and over again.’
Midwives were seen as ‘the key… a way in’ to providing wider support to women, and some described their specialist midwives helping ensure they were able to attend their appointments.
Midwives themselves argued that specialist provision was needed across the country, shaped by local need. Specialist clinicians emphasised the importance of professional autonomy, flexibility and support from managers to meet different women's needs.
Yet professionals also said that all midwives—not just specialists—required skills and confidence to support women with complex needs, enough time in appointments, and a knowledge of what to do when women disclose issues.
Navigating multiple systems
Many women were making contact with and managing multiple support services, either within NHS services and/or across housing, social services and mental health and counselling. Multiple appointments could be hard to manage and travel ‘very expensive’. In these situations, specialist midwives described themselves as ‘holding it all together’:
‘You're a bereavement counsellor. You're a housing support person and all these other things.’
Information-sharing between systems and services was described as a significant obstacle to providing full continuity of care. IT systems were often incompatible or inaccessible, and information-sharing often dependent on professionals having enough time and flexibility to pursue individual contacts. This was a particular problem when women moved between boroughs due to unstable housing.
There was a great deal of variety in the support services available, as well as the speed and thresholds for acceptance of referrals. Particular issues were identified in mental health services, with gaps highlighted for women moving from Child and Adolescent Mental Health Services (CAMHS) to adult services, and for women with moderate needs.
Children's social care was particularly feared by women:
‘I was so scared of social services … all you heard they take your children away from you.’
However, most reported good experiences after referral.
Moving forward
This report should be seen as the start of a process of further consultation and co-production. We look forward to working closely with a wide range of professionals, reflecting the full spectrum of issues and services, to drive the changes needed to better respond to women dealing with severe and multiple disadvantage.